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Saturday, August 31, 2013

August

I'm a little behind here, so going for a few summaries to update my life. This was written at the end of August.... Well.... so much for attempting to post every day. Rather like the month of August, that feels like a failed attempt. In fact, if anyone creates time travel in the next few hours, I would very much like to go back to the beginning of the month please....Given my complete inability to summarise, I am still going to attempt it.

August was supposed to be 'packing and organising' month

Organising really involved making sure I saw all my doctors and was up-to-date with everything prior to leaving for Scotland

This started off ok.....

5th August:

I had my "dynamic neuromusculoskeletal ultrasound scan"

This needs more discussion ... for another time, it was a very cool, new way of looking at what is going on in my muscles/ nerves/ soft tissue as my arm moves

Basically, my nerves are covered in scar tissue; being compressed with movement and swelling (hence the numb/ burning hand) and it showed signs of lots of damage to all the tissue - nerves/ muscles/ ligaments/ tendons/ fascia etc. in the area

This visually confirmed the diagnoses of Thoracic Outlet Syndrome and Brachial Plexopathy

Upshot is:

Nothing will heal until nerves heal

Nerves need time, rest (and patience) as they heal at a rate of 2mm (yes, millimetres) every 4-6 weeks

I still have a long recovery ahead of me; doctor estimates 2-3 years until my arm is "functional"

Good news is:

I do not have an inexplicable pain syndrome and can stop researching ketamine comas now

My pain has been 'visualised' - I SAW it; and saw it compared to the other side; it IS real pain, with a REAL physical cause and can now be very specifically pinpointed

Bad news is:

Nobody knows if my right arm/ shoulder will get better, will gain full function again, or to what degree; nobody knows what my pain will do, if/when it will improve, or by how much

I am not the most patient person..... give me a hundred exercises to do every day and I can happily (even through those tears) work on that; give me some simple, gentle stretches to do "only on good days" and I'm not so good with that... (Doctor: "when you were training at gymnastics and you had a tough night in the gym, you were sore afterwards, you'd have a day off the next day, right?" Me:"..... ummmmm, I know what the answer to this question should be....")

Use pillow part of sling so that weight of arm is not pulling on nerves

Exercise, but do not raise pain level in doing so - e.g. if the pain is always a 5/10, do not push things and spike to a 6 or an 8

Use various modalities to try to stretch out all the scar tissue that is 'binding me down'

Drink lots of (good) green tea.... super super super anti-oxidants, apparently. I think I actually like it now. I even made citrus infused iced green tea - this actually tasted a lot nicer than I thought it would!

Success(ish):

'Swimming' in a heated therapy pool

I can (kind of) do this. It gets me the best exercise I have found, as there is no weight from my upper body. I can doggy paddle and float on my back..... baby steps.

I CAN however, somersault underwater - that was the most fun I'd had in AGES!!

Steam room - heat helps break up scar tissue with gentle stretching

6th August :

Just as we were about to leave for another of my appointments Mum fell downstairs... 4 days before she was due to fly home to Scotland

DRAMATICALLY

She slipped on the 3 bottom wooden steps, kind of arched her back as she fell, so hit lower back then shoulder and in that split second where you watch to see if someone is going to get up, or not, she started crying out

This was not good

I was home alone with her and really felt I was not much help (physically) - I couldn't help her off the stairs, but did manage to get ice, pillows to support her and call a friend, my Dad, and then when things were definitely not improving, 911

EMTs and Paramedics (I guess from Kimberton Fire Company and then associated with Phoenixville hospital) were fantastic

She did go to hospital strapped to a backboard, with neck-brace on, in the ambulance

Diagnosis: Badly bruised ribs (told this is not really different from strain/ sprain/ fracture and had to delay her flight in case microscopic fragments of bone came loose with the change in air pressure

She was in agony, in bed with strong painkillers for a few days, but started physiotherapy very quickly with a lower back specialist.

I am pleased to say that she has made a REMARKABLE recovery - still has some twinges and spasms, and has to be careful with how she sits and things like that, but she will definitely be dancing at my sister's wedding next month!

Same day, I had my appointment at Penn with the specialist physio I see; very kindly, our friend took me (she was such a wonderful help)

He was very interested in the new scan, the paper that Dr F has written (first paper on diagnosing Thoracic Outlet Syndrome with visual confirmation - published in May) and showed me his notes from my first appointment with him where he had written "brachial plexopathy". I never doubted he was right - but nobody had the tests to prove it.

My shoulder function is now at 20% of a 'normal' shoulder. That's 5 points increase in 11 months. 12 points increase is significant. He is not happy - frustrated that it is not going faster (not frustrated at me), but I am trying (very very hard) to focus on the fact that is is at least heading in the right direction..... S-L-O-W as it is.

August kind of split into 3 parts:

Before Mum's fall - trying to get things organised (where her biggest concern was how many pairs of shoes to pack)

After Mum's fall - where things kind of stopped, time seemed to freeze for a few days, Dad had to take time off and try and help, and I tried to do more, but had had a week full of sore appointments, so I was pretty sore and tired, so not very helpful, really. At one point my Dad was going to make tea, I said I could do it, I was going to get some too.... "And how do you plan to carry two tea cups upstairs?" Ummmmm....

Then, After Mum Left although, to be honest, I could also call this After My 'Incident'...

Mum left on 17th - a week made a huge difference to her, so we were all delighted to see her improve so quickly. And very relieved. It did, of course, bring up many strange comparisons between what I did - a simple slip, gradual building pain and causing so much damage; and what she did - seeming instantaneously horrific, but getting better relatively quickly. I genuinely was just delighted to see her make good progress so quickly - it was quite a scary thing to watch, and to deal with as well.With Mum away, and Dad working, I have to drive myself to my physio appointments etc. now. I've been driving for a couple of months, I have adapted so that I am doing it with pillows supporting me, and... well, my physio did say "people with one arm can drive, you should be driving" - so ok from the physios, doctor and insurance company (and passed my mum's little driving test!) and I'm ok with short journeys - in an automatic (i.e. no gearstick to drive with).

My 'Incident'

The Monday after Mum left, I was driving to physio and my back started to spasm, with the pain travelling from under my scapula around my ribs. Uncontrollable, squealing out loud in the car-type pain. I really don't know how I got to physio; it was a very conscious "not long now", "breathe... count your breaths..." - I was probably talking to myself. I made it to the clinic, collapsed on the front desk and was helped through to a private room, given some ultrasound with my medication, and laid on ice and TENS for a good hour... maybe two hours. When I was numb enough, the pain was under control, and I felt ready, they let me drive home. Looking back, it all seems a blur. I know I was there, I know I couldn't stop sobbing, I had no idea what was happening, but it was agony. The next few days saw packing completely abandoned, and I was back in bed with my ice machine... no packing and organising happening as planned...

I saw my orthopaedic doctor here a couple of days later and he has diagosed a strained muscle in my ribs. Great. He was actually more excited about the movement in my scapula(!) - having not seen me since he took out my staples. Even although he said it is completely abnormal and movement may never be normal, he was amazed to see it actually moving at all. I guess I am so immersed in this now, that I forget how new and amazing this really is. The muscle pull could have happened any way - Dr said people can do it sneezing, or coughing, but it is throwing the rest of my ribs out (not that they needed another thing to help them dislocate themselves...). So my right rib cage is in entirely the wrong position - and seems to be moving more each day - , scar tissue seems to be breaking up a bit because of it, and it kind of feels like I have a back-brace on, inside me,back to front.... my flight home has been changed to Sunday 31st now, and I am planning just to take all my painkillers and hope I sleep!

And............ in between all that, I have been attempting to pack my life into 3 bags and decide what I really need - HOW have I accumulated all this stuff?! Let's just saw it's a slow process..... pack for 20 minutes... ice for 20 minutes.... lie down a bit longer... wait on drugs to work.... pack for 20 minutes.....

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About Me

I am writing this blog mainly because I hope to share information about my recovery from Lyme disease; and to help increase awareness about Lyme, especially in Scotland across the UK. I also love crafts, jewellery & accessories, gardening & growing vegetables, painting, books, art and quotes, so I might end up talking about some other stuff too... *edit* ESPECIALLY my crazy-unusual shoulder surgery... and my apparent bad karma!